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The Tube Volume 1, Issue 2 July-December 2013 INSIDE THIS ISSUE: NACCTT Mission 1 President’s Letter 2 Patient Story 3 Articles of Interest 4 Cooking with IBD 6 Upcoming Events 7 The mission of the NACCTT is to improve the lives of persons diagnosed with Crohn’s Disease (CD) and Ulcerative Colitis (UC). We are also designed to establish greater awareness about CD and UC in Trinidad and Tobago. NACCTT MISSON 2 The Tube Volume 1, Issue 2 July-December 2013 President’s Letter Hello Supporters, Welcome to the NACCTT‘s July to December issue of ‗The Tube.‘ Since our last issue we were officially launched as an Association. We have had two newspaper articles published highlighting our cause, we attended many awareness events. We were even on the radio! All exciting stuff, right? In this issue we have introduced a new section called ‗Cooking with IBD.‘ It gives recipes that have been tried and tested by fellow IBDers. So go on and give them a try! We just passed Crohn‘s and Colitis Awareness Week (December 1st – 7th). It is our hope that you did and are doing your part, in whatever way you can, to help raise awareness in your corner of T&T. Look out for lots of awareness events and fund raisers from the NACCTT. We wish you the best health in 2014 and hope that you continue to be a part of our cause. Until next issue stay healthy! Kelly-Ann Bahadur President Interview on ‘The Lady’s Room’ with host Marsha Marchan on Wack Radio 90.1 Fm 3 The Tube Volume 1, Issue 2 July-December 2013 Crohn’s and Colitis Patient Story Here I was, nearing the end of my vacation in Miami and out of the blue I got food poisoning… or what I thought was food poisoning. This time seemed different, very different from what I remembered it to be. I did not realize that this was something way more than I could have ever imagined. I remember my brother telling me jokingly, ―Aye how you getting on so, it‘s only diarrhea!‖ and I‘m sitting there, exhausted and weak thinking, ―Like hell it is.‖ Upon returning to Trinidad, I was still just as sick and getting worse. Slowly but surely I began to think this wasn‘t going away soon. I was confused, tired, in pain and nearing the end of the little bit of patience I had back then. Every day that passed, the number of times I went to the bathroom increased. I saw the concern and frustration setting in daily on my family‘s faces. I was taken to about five doctors in Trinidad and two in Miami but I still had not one clue as to what was going on with my belly and why I couldn‘t stop going to the toilet! My family and I were still trying to rule out all the possible causes before thinking it was anything serious. I had been back from my vacation a little over a month when I was taken to the hospital. I had lost some blood and weight and I was very dehydrated. Those ten days in the hospital passed with a lot of poking and prodding and I couldn‘t help but feel like they were only experimenting on me without any real results. Finally I was diagnosed with UC and knowing what the problem was I felt completely relieved, a whole load lifted off my shoulders. Now the next step was treating it. I remember the doctors telling me my treatment options and them warning me about the side effects of the steroids, ―This is going to make your cheeks a little rounder ok?‖ I just remember thinking, ―Hell that‘s a small price to pay to feel better, I'm in 100%!‖ (Not knowing that, that was just one of the MANY side effects I would come to experience). I was on and off the steroids and my other medications just weren‘t working for me anymore. My doctor recommended that I try something more potent. My family and I did not like the side effects and decided to seek another alternative, herbal medication. I was very reluctant in the beginning but as I felt like I had no other choice at this point, I gave it a shot. I was completely surprised as to how quickly I saw results without the horrible side effects as the steroids. It‘s been 3 years since I‘ve been diagnosed and I‘m no longer on any other pharmaceutical medications but continuing with my alternative treatments. I‘m doing much better than I have been in the past and I thank God every chance I get for helping me be a more appreciative, positive and patient person. This disease, as horrid as it can be, has taught me things about myself and has helped me become someone better. It has helped me recognize my potential and help me in aligning my perspectives. My tips in dealing with UC: pray, keep positive and watch your diet! -Safiyya’s Story 4 The Tube Volume 1, Issue 2 July-December 2013 Articles of Interest “Manufacturing a New Gut to Treat GI Diseases” Press Release by Brigham and Women's Hospital (Dec 3, 2013) Boston, MA - For those living with gastrointestinal disorders, such as ulcers or Crohn's disease, treatment often means quelling uncomfortable symptoms through medications or dietary changes. But what if one day treatment meant doing away with the old gut for a new gut free of inflamed or diseased tissues? That is where scientists at Brigham and Women's Hospital (BWH) and Massachusetts Institute of Technology (MIT) are hoping their new study findings will lead. In their work, the researchers were able to grow extensive numbers of intestinal stem cells, then coax them to develop into different types of mature intestinal cells. The study is published online in this month's Nature Methods. "Being able to produce a large inventory of intestinal stem cells could be incredibly useful for stem cell therapy, where the cells could be delivered to patients to treat diseases such as Crohn's disease and ulcerative colitis," said Jeffrey Karp, PhD, Division of Biomedical Engineering, BWH Department of Medicine, cosenior study author. These cells could also be useful for pharmaceutical companies to screen and identify new drugs that could regulate diseases from inflammatory bowel disease, to diabetes, to obesity. However, to date there hasn't been a way to expand intestinal stem cell numbers." In the "crypts" of the human gut are immature adult stem cells that live alongside specialized cells called Paneth cells. The stem cells remain immature as long as they remain in contact with Paneth cells. But the researchers found that when Paneth cells are removed and replaced with two small molecules involved in cell signaling, these molecules could direct the stem cells to develop into pure populations of proliferating stem cells. By introducing other molecules to the mix, the pure cells could further develop into specialized mature intestinal cells. "This is an opportunity to generate a large number of relevant mature gastrointestinal cell types that was not possible before and enable high-throughput screening using these cell types,"said Xiaolei Yin, PhD, Center for Regenerative Therapeutics, BWH Department of Medicine, lead study author. Moreover, the researchers note that their findings could be potentially applied for in vivo use of small molecule drugs to help regenerate cells to replace damaged gut tissue caused by disease. "This opens the door to doing all kinds of things, ranging from someday engineering a new gut for patients with intestinal diseases to doing drug screening for safety and efficacy," said Robert Langer, ScD, MIT, co-senior study author. This research was supported by the National Institutes of Health (DE013023) and a Harvard Institute of Translational Immunology/HelmsleyTrust Pilot Grant in Crohn's Disease. 5 The Tube Volume 1, Issue 2 July-December 2013 Eating Out in Public with Crohn’s Written by Dale Kiefer | Medically Reviewed by George Krucik, MD for Healthline: Connect to Better Health. For some Crohn‘s sufferers, eating out in public may seem like a daunting proposition. With a little planning, however, it needn‘t be a minefield. Nutrition is an issue of special concern for people with Crohn‘s disease. Because it affects the digestive system, Crohn‘s may interfere with appetite. Even if a sufferer is able to eat a balanced diet, some forms of Crohn‘s can interfere with the digestive tract‘s ability to absorb nutrients, putting them at risk for malnourishment. What’s on the Menu? Every Crohn‘s sufferer is different. Generally, any food that can be tolerated is probably OK to eat, whether it‘s at home or out in public. Of course, choosing healthful foods is always a good idea. If you‘re prone to cramping and diarrhea, you may want to avoid high-fiber foods, such as fresh fruits and raw vegetables. Instead, eat bananas or applesauce, refined carbohydrates (such as white bread, white rice, or pasta), skinless potatoes, fish (avoid fried fish), and olive or canola oils. Cold water fish—such as tuna, salmon, or swordfish—are rich in omega-3 fatty acids, and could be an excellent menu selection, especially when broiled, poached, or steamed. Omega-3 fatty acids are essential nutrients that exert antiinflammatory effects in the body, possibly discouraging further digestive tract inflammation. It may be helpful to avoid spicy foods, or foods high in sugar or fat. Likewise, Crohn‘s sufferers are advised to avoid whole grains, seeds, nuts, and popcorn. Based on these general recommendations, some restaurants, are likely to be better choices than others. It‘s also advisable to consume smaller portions than some restaurants tend to serve. Rather than being tempted to overeat, consider asking to have leftovers wrapped up for later. The non-profit Crohn‘s and Colitis Foundation of America recommend the following tips for enjoying yourself while dining out: Avoid eating out if you’re famished. If you show up to a restaurant starving, you may be tempted to overeat, which could trigger symptoms. Eat a small snack that you‘re likely to tolerate well before going out, to avoid overindulging at the restaurant. Call before you go. If you have concerns about the menu, call ahead. Many restaurants are happy to accommodate special requests, or to answer any questions that you may have about ingredients or cooking methods. Don’t be shy—ask for help. Feel free to ask for special considerations. Dining out should be a pleasant experience. At sit-down restaurants, ask your waiter for assistance in meeting your special needs. Call ahead to inquire if the chef is willing to alter the dishes to accommodate you. Don’t overdo it—watch your portions. Many restaurants offer appetizers or even child-size portions. Consider ordering these items to reduce the likelihood that you‘ll overeat. Indulge your cravings—sparingly. While attention to good nutrition is crucial, everyone deserves to live a little occasionally. So-called ―junk food,‖ which is high in calories or fat but low in nutritional value, can be consumed in small amounts as a special treat from time to time. Just avoid overdoing it—and enjoy! 6 The Tube Volume 1, Issue 2 July-December 2013 Cooking with IBD Pumpkin Soup Servings: 2 Ingredients 2 cups Pumpkin 1 cup Vegetable Or Chicken Stock Or Water 1/4 cup Plain Yogurt 1/8 cup Brown Sugar Dash Of Nutmeg Or Your Favorite Spice Salt To Taste Preparation Instructions In a pot cook pumpkin in a small amount of oil until tender. Add the stock and sugar until simmering. Mash out the big chunks, the transfer the mixture to a blender or food processor (or use an immersion blender) and puree until velvety smooth. Add yogurt and spice, and then blend again. Serve while warm. Enjoy! Lemon Grass/ Fever Grass Tea Serves 2 Ingredients 2 stalks of lemon grass / fever grass ½ liter of water Peeled ginger (optional) Sugar or honey to taste (optional) Preparation instructions On a chopping board, crush or finely chop lemongrass to release the flavor. Do the same for the ginger if used. Bring the water to a simmer over medium to low heat. Add crushed lemongrass and ginger. Simmer for 5 to 8 minutes. Keeping the pot slightly covered to allow steam to escape. Remove from heat. Add your choice of sweetener to your desired taste and stir. Let sit for a further 2 minutes Pour into teacups and serve. Note: This tea can be served cold as well. Simply let the tea cool, chill or add ice, and serve. Disclaimer: While these two recipes have been proven soothing and gentle on the stomach for some of our members, we at NACCTT wish to caution that not all foods are proven effective for everyone. Each person is different. What might work for some, might not work for others. Please proceed gently. 7 The Tube Volume 1, Issue 2 July-December 2013 Upcoming Events Member‘s meeting Saturday 11th January, 2014 Member‘s Day Out to La Vega Estate January, 2014 Gastroenterology Seminar April, 2014 Members of the NACCTT at a Health Fair hosted by the Hillcrest Gardens Home Owners Association Editorial Team: Steffi Kowlessar, Richard Dhalai, Challey Ann Maharaj Contacts Us: [email protected] www.crohnsandcolitistt.com www.facebook.com/crohnsandcolitistt 482-0736 / 361-6617 @nacctt